Transgender advocates seek new diagnostic terms

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San Francisco • Does a woman who strongly believes she was meant to be a man have a mental condition or a medical problem? Is a man who cross-dresses in need of psychological help? What about a boy who pretends to be a girl in make-believe games and chooses only female playmates?

The nation's psychiatric establishment is wrestling with these questions, among others, as it works to overhaul its diagnostic manual for the first time in almost two decades. Advocates have spent years lobbying the American Psychiatric Association to rewrite or even remove the categories typically used to diagnose transgender people, arguing that terms like Gender Identity Disorder and Transvestic Fetishism promote discrimination by broad-brushing a diverse population with the stigma of mental illness.

"The label of mental defectiveness really places a burden on trans people to continually prove our competence in our affirmed roles," Kelley Winters, a Colorado scholar who has helped lead the push for changes, said.

Although the association's new Diagnostic and Statistical Manual of Mental Disorders is not scheduled to be printed until the end of the year, the updates are taking shape after three rounds of proposed changes. Professionals who have been part of or closely observing the amendment process say the latest wording, while not going as far as many advocates wanted, respects the broader shift in society's understanding and acceptance of what it means to be transgender since the last major revision of the manual was published in 1994.

"All psychiatric diagnoses occur within a cultural context," New York psychiatrist Jack Drescher, a member of the APA subcommittee working on the issue, said. "We know there is a whole community of people out there who are not seeking medical attention and live between the two binary categories [of male and female.] We wanted to send the message that the therapist's job isn't to pathologize."

The most symbolic change under consideration so far for the manual's fifth edition, known as the DSM-V for short, is a new name for Gender Identity Disorder, the diagnosis now given to adults, adolescents and children with "a strong and persistent cross-gender identification." In the manual's next incarnation, individuals displaying "a marked incongruence between one's experienced/expressed gender and assigned gender" would be diagnosed instead with "Gender Dysphoria," a term that comes from the Greek word for emotional distress.

While the shift may seem purely semantic, switching the emphasis from a disorder that by definition all transgender people possess to a temporary mental state that only some might possess marks real progress, according to Dana Beyer, a retired eye surgeon who helped the Washington Psychiatric Society make recommendations for the chapter on "Sexual and Gender Identity Disorders."

"A right-winger can't go out and say all trans people are mentally ill because if you are not dysphoric, that can't be diagnosed from afar," Beyer said. "It no longer matters what your body looks like, what you want to do to it, all of that is irrelevant as far as the APA goes."

Persuading the psychiatric profession to redefine who and who does not qualify for its care has historical precedent as a civil rights issue. In 1973, the APA, responding to pressure from the gay and lesbian community, concluded that same-sex attraction alone was a normal part of human experience, not an illness.

Although it took another 14 years for all conditions related to homosexuality to be lifted from the DSM, the earlier shift is regarded as a major milestone in the gay rights movement, one that paved the way for gays to adopt children, get married and serve in the military.

Like gay men and lesbians before them, transgender people have seen the APA's language cited to their disadvantage. Dan Karasic, a San Francisco psychiatrist who has offered suggested changes to the DSM-V through his affiliation with the World Professional Association for Transgender Health, cited a Utah case in which he has been asked to prepare expert witness testimony involving a transgender woman who is at risk of losing the children she fathered before her transition.

"The argument is that one criteria for terminating parental rights is if one parent has a severe, chronic mental illness that might be harmful to the child," Karasic said. "A lawyer is apparently using that to argue that because the person is trans and has a diagnosis of GID, she should have her parental rights terminated."

But while there are parallels, achieving what the APA did for gays four decades ago is more complicated for people who identity as transgender, an umbrella term that encompasses transsexuals, cross-dressers and others whose self-concepts otherwise do not align with the male or female label they were given at birth. Unlike sexual orientation, the accepted protocols for treating many patients expressing profound discomfort with their given gender call for medical intervention.

Since at least the 1980s, for example, a diagnosis of Transsexualism or Gender Identity Disorder has been used by doctors, mental health professionals and a growing number of health insurers to justify access to hormones or surgery for patients who decide to physically transition to a new sex. Eliminating it from the DSM-V therefore could make it more difficult for self-identified transsexuals to qualify for treatment unless a sex change is someday recognized as a physiological condition.

"Let's say someone born a woman walks into my surgical office and says, 'I would like my breasts removed.' What's the diagnosis?" Drescher said. "The procedure is a mastectomy, but if there is no diagnosis, it is cosmetic surgery and your insurance won't pay for it."

As work on the DSM-V moves forward, lawyers who specialize in representing transgender clients have found themselves in the uncomfortable position of arguing that Gender Identity Disorder needs to stay in the manual in some form. Shannon Minter, legal director of the National Center for Lesbian Rights, said that while it's true the diagnosis has been used against some, it also has benefitted others.

"Having a diagnosis is extremely useful in legal advocacy," Minter said. "We rely on it even in employment discrimination cases to explain to courts that a person is not just making some superficial choice ... that this is a very deep-seated condition recognized by the medical community."

Along with pushing for a less-loaded name for Gender Identity Disorder, activists and mental health professionals who work with transgender clients also want to see the symptoms of it revised so the diagnosis is not applied to people whose distress stems from external prejudice, adults who have successfully transitioned to a different gender, or children based on sex stereotypes such as aversion to "rough-and-tumble-play" or "typical feminine clothing."

Kenneth Zucker, a Canadian psychiatrist who chairs the APA Sexual and Gender Identity Disorders Work Group, predicted that with more transgender people coming out at younger ages, and little scientific understanding of what causes someone to be transgender, the debate is likely to continue.

"All of us who work in this field are seeing a huge increase in the number of people who come to see us who have Gender Dysphoria," Zucker said. "There is clearly a clinical need for there to be specialists in this area, and apart from the philosophical musings, having a diagnosis facilitates that."

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